What next ... hmmmmm
Got to continue tidying up and sorting out too. This place has people on site and alarm cords and things like that but I am in a difficult position at the moment and after my last two hospital visits wondered if I need more .. and more than the alarm pendant. Hopefully I'll be on my way home in the relatively near future .. but I don't really want to put pressure on people to look after me while this is all going on ... so I've been wondering if a home would be the best place while getting the future sorted out .. I've no idea quite what is going to happen .. the last two times in hospital showed that anything is on the cards really .. and I don't want to put pressure on anyone at the moment.
So, I'm going to be looking into that .. and talking it over too. All sides need talking about. I've told my doctor how I see things at the moment .. have to see. I'll read all the relevant info. I'd still have freedom. I also want to now what is on the cards medically .. because that'll make a difference to what I decide. Obviously if time is limited to months rather than years .. or a couple of years rather than many years it'll influence my decision. I want to know roughly .. and I expect they have a rough idea!!!!!! I expect the huge amounts of medication I'm on will have some effect ... because they have side effects. I think I know roughly what could happen .. what I'm not sure about is the effect the auto immune illness will have. If there aren't any random illness I think I know .. but it's just the random illnesses and fevers that could change that cause of the steroids and steroid sparing drugs I have to take .. still quite a hefty dose with the two combined .. but that's how it has to be.
Was talking this evening about all these different illnesses there are ... amazing cause you just don't get to hear about them generally I guess .. guess there are thousands of them. Since I've been ill myself I've discovered so much about them that I didn't know before ... there might not be zillions of people with them .. but there are a lot of illnesses. Think I wrote about that before .. but as time has gone on I've been even more amazed as I've found out more.
Obviously I talk a lot more about illness than I once did .. I now quite a few people who are ill now or maybe it's more accurate to say that we talk more about illnesses that we know about .. illnesses and suggestions about things that might possibly make things a bit easier. I do now more people who are ill generally though than I did before I became ill myself. People'll talk more about their illnesses if they know you're ill too I think.
It's strange .. I've never thought "Why me" about having developed this condition. I know that it's generally what people are said to go through in the stages of acceptance of this type of illness .. when it's this serious .. but I didn't. I just accepted that it had happened .. though I guess I didn't really understand much about it to begin with .. but I've never thought that ... possibly because I'm well aware of the things people can go through in life .. so, on that level I wasn't surprised .. so it just didn't occur to me to think along those lines .. I hadn't heard of the illness before .. that bit surprized me I must say .. but having developed a serious condition didn't ... because, obviously people can, and, there was no reason why I shouldn't be one of those people anymore than there is any reason why I shouldn't have developed one either!!!!
I thought I had cancer before the illness had been diagnosed .. I guess that probably is the first thought that comes into a lot of people's minds when something like this happens. I've known a few people with cancer and it was a pretty reasonable suposition with the symptoms I was presenting .. infact I think I've read somewhere, or been told, that there is a cancer that is a bit like this. Think I mentioned that sometime back too.
They're all illnesses where the body stops working as it should .. that's why they're not transmittable .. because it's the persons body that is causing the problem .. obviously all auto immune illnesses are like that ... just like cancers are
Means the doctors have to rely on people donating antibodies for them to experiment on.
I was, just reading back what I'd written before and was thinking about me brother and the prints .. think I said I was going to give him one of Warwick Castle ages ago when I was blogging about the prints before .. someone said to me in the street , not Warwick Castle ..I never did give him that one .. infact I never gave him one at all. Just didn't get round to it probably because I was so ill. There was one of Warwick Castle there this evening .. it was quite lovely .. very kind of atmospheric in the way it's been drawn and painted .. but I chose a couple of others .. not quite sure which one I'll give to him. Perhaps ... both!!!!!! Ahhhh, I don't now yet. When I first started going there I won a few in the raffles which was nice .. still got them and I have a small painting of his to take back with me. I met someone not so long ago who has one too .. I was quite surprised.
Dave has a lovely singing voice too ... really nice. Mine has gone with my illness ... not with age .. his is still as clear as a bell .. don't think it can have changed over the years .. it's beautiful. I was listening to him playing guitar and singing this evening ... just the last song by himself .. I think he sang "It's now or never" ... can't actually remember what he sang .. but that's in my mind and I think it was that .. I was just thinking how lovely it was listening to him. Nah .. I wasn't sad .. it's gone .. I kinda croak along at times now and I'll never play a musical instrument again now ... BUT .. there're a lot of other things out there to do .. aren't there. A teach yourself book or evening classes and away you go .. learning something new ... huh. If ya want to. I'll never do judo again ... well, obviously .. can't dance .. so, don't ask me.
But ...................................
So, I'm going to be looking into that .. and talking it over too. All sides need talking about. I've told my doctor how I see things at the moment .. have to see. I'll read all the relevant info. I'd still have freedom. I also want to now what is on the cards medically .. because that'll make a difference to what I decide. Obviously if time is limited to months rather than years .. or a couple of years rather than many years it'll influence my decision. I want to know roughly .. and I expect they have a rough idea!!!!!! I expect the huge amounts of medication I'm on will have some effect ... because they have side effects. I think I know roughly what could happen .. what I'm not sure about is the effect the auto immune illness will have. If there aren't any random illness I think I know .. but it's just the random illnesses and fevers that could change that cause of the steroids and steroid sparing drugs I have to take .. still quite a hefty dose with the two combined .. but that's how it has to be.
Was talking this evening about all these different illnesses there are ... amazing cause you just don't get to hear about them generally I guess .. guess there are thousands of them. Since I've been ill myself I've discovered so much about them that I didn't know before ... there might not be zillions of people with them .. but there are a lot of illnesses. Think I wrote about that before .. but as time has gone on I've been even more amazed as I've found out more.
Obviously I talk a lot more about illness than I once did .. I now quite a few people who are ill now or maybe it's more accurate to say that we talk more about illnesses that we know about .. illnesses and suggestions about things that might possibly make things a bit easier. I do now more people who are ill generally though than I did before I became ill myself. People'll talk more about their illnesses if they know you're ill too I think.
It's strange .. I've never thought "Why me" about having developed this condition. I know that it's generally what people are said to go through in the stages of acceptance of this type of illness .. when it's this serious .. but I didn't. I just accepted that it had happened .. though I guess I didn't really understand much about it to begin with .. but I've never thought that ... possibly because I'm well aware of the things people can go through in life .. so, on that level I wasn't surprised .. so it just didn't occur to me to think along those lines .. I hadn't heard of the illness before .. that bit surprized me I must say .. but having developed a serious condition didn't ... because, obviously people can, and, there was no reason why I shouldn't be one of those people anymore than there is any reason why I shouldn't have developed one either!!!!
I thought I had cancer before the illness had been diagnosed .. I guess that probably is the first thought that comes into a lot of people's minds when something like this happens. I've known a few people with cancer and it was a pretty reasonable suposition with the symptoms I was presenting .. infact I think I've read somewhere, or been told, that there is a cancer that is a bit like this. Think I mentioned that sometime back too.
They're all illnesses where the body stops working as it should .. that's why they're not transmittable .. because it's the persons body that is causing the problem .. obviously all auto immune illnesses are like that ... just like cancers are
Means the doctors have to rely on people donating antibodies for them to experiment on.
I was, just reading back what I'd written before and was thinking about me brother and the prints .. think I said I was going to give him one of Warwick Castle ages ago when I was blogging about the prints before .. someone said to me in the street , not Warwick Castle ..I never did give him that one .. infact I never gave him one at all. Just didn't get round to it probably because I was so ill. There was one of Warwick Castle there this evening .. it was quite lovely .. very kind of atmospheric in the way it's been drawn and painted .. but I chose a couple of others .. not quite sure which one I'll give to him. Perhaps ... both!!!!!! Ahhhh, I don't now yet. When I first started going there I won a few in the raffles which was nice .. still got them and I have a small painting of his to take back with me. I met someone not so long ago who has one too .. I was quite surprised.
Dave has a lovely singing voice too ... really nice. Mine has gone with my illness ... not with age .. his is still as clear as a bell .. don't think it can have changed over the years .. it's beautiful. I was listening to him playing guitar and singing this evening ... just the last song by himself .. I think he sang "It's now or never" ... can't actually remember what he sang .. but that's in my mind and I think it was that .. I was just thinking how lovely it was listening to him. Nah .. I wasn't sad .. it's gone .. I kinda croak along at times now and I'll never play a musical instrument again now ... BUT .. there're a lot of other things out there to do .. aren't there. A teach yourself book or evening classes and away you go .. learning something new ... huh. If ya want to. I'll never do judo again ... well, obviously .. can't dance .. so, don't ask me.
But ...................................
posted by Zeb at 1:23 PM
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